VIDEO INTERVENTION/PREVENTION ASSESSMENT-TRANSITIONS

Children'S Hospital Boston, Boston MA

Investigators

Linked publications & trials

Abstract

Michael Rich, MD, MPJ, is an Adolescent Medicine physician with special clinical expertise and research interest in chronic diseases. He is particularly interested in investigating the patient's illness experience in order to develop health care delivery that is effective and sensitive to patient needs. In 1998 , he was awarded the 1998 New Investigator Award of the Society for Adolescent Medicine for his innovative patient- centered research method, Video Intervention/Prevention Assessment (VIA). Derived from established social science research methods, VIA is a qualitative technique which analyzes "video diaries" created by patients of their "real life" experiences with illness and health care to teach clinicians about disease and disability as it exists in the contexts of their lives, environments, and psychosocial features of asthma which had previously been inaccessible to traditional investigative techniques. A K23 award would allow Dr. Rich to advance this research career and further develop the VIA methodology through formal course work in the underlying research methods and analytical techniques, by integrating quantitative measures of clinical effectiveness under the sponsoring mentorship of Donald Goldmann, MD, and by working under the guidance of co-mentors who are leading experts in the research fields which inform VIA, including visual anthropology, qualitative research methods, and quantitative and qualitative health services research. The Research Plan applies VIA to the examination of the transition from pediatric to adult health care systems by young people with chronic, function-limiting conditions and special health care needs. Focusing on patients with myelodysplasia/spina bifida and sickle cell disease, the VIA Transitions study will use clinical, qualitative, and quantitative means to investigate: 1) What is the patient's health-related quality of life (HRQL) before, during, and after transition from pediatric to adult care? 2) What are the patient's needs at each stage of transition and how well are they being met? 3) What is the experience of transitioning care for a patient with complex needs and a function-limiting condition? Study participants will be assessed with clinical interviews and standardized HRQL instruments before making visual narratives of their illness experience at three points: 1) while they are under the care of the pediatric medical system, 2) when they leave pediatrics and initiate care in the adult health care system, and 3) after they have established their adult care for approximately one year. The visual narratives will be coded and triangulated with the data derived from clinical interviews and HRQL instruments for areas of congruence and dissonance. The finding swill be applied to the design of more patient-sensitive transition programs and management strategies. Applying VIA to a new clinical problem and analyzing the data from the original asthma pilot and the Transitions study. Dr. Rich will refine and modify this investigative methodology so that it is flexible enough to be applied to a broad range of clinical questions while retaining the richness of the data derived.